"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
— Arundhati Roy

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18 July 2011

What is Self-Advocacy?

Last week, while at a meeting of the Adult Services Subcommittee, a visitor to our meeting said something about "Self-direction," to which I added, "And self-advocacy."

Another one of the subcommittee members, the woman sitting to my right, immediately retorted, "Don't exclude nonverbal people with autism!" This individual is the mother of an adult non-speaking Autistic son with aggressive maladaptive behaviors.

When I responded with, "Excuse me, I didn't say anything about excluding nonverbal people," she continued to say that "Not one nonverbal person is in this room," to which I replied, "But they are welcome to come."

The mother nodded. "They are welcome to come, but you won't see any of them here. They're not represented here. I didn't bring my son so you wouldn't get bruised."

I raised an eyebrow. "Do you mean that literally?"

"If my son were here," said the mother, "he would hurt you. He is very aggressive. That's why he's not here right now."

Later, when someone proposed that the budget for the Department of Developmental Services's Division of Autism should provide services for all people who need them, this mother added, "I read all these people on the internet who are very happy to be who they are, who are proud of their differences and quirkiness, and who are very deeply offended at the idea that they might need services or be cured. We need to make sure the squeakiest wheel doesn't get the most attention. The people who speak the most shouldn't get the most services."

Choosing not to mention the fact that highly verbal Autistic people tend to overlooked in vast numbers in terms of receiving any services in favor of non-speaking Autistic people with few adaptive functioning skills (in direct contradiction to the mother's statement) I responded, "We should amend that language to say anyone who either needs or wants services; that way, those whose families advocate for them can receive services as well as people who request them for themselves." When I said, "We need to ensure that anyone who needs services is able to receive them," the mother snapped, "We're stating the obvious."

Sadly, this kind of animosity and vitriol is all too common in the autism community. We're all familiar with it. But let me dispel a few misconceptions that this mother demonstrated:

Firstly, self-advocacy is not limited to highly verbal people with the Asperger's diagnosis or a self-diagnosis. There are many Autistic people involved with the self-advocacy movement who are nonspeaking, have little verbal abilities, have few adaptive functioning skills, and or may require intensive supported living services, as well as people with many verbal skills, moderate to high-level adaptive functioning skills, and who may require few if any supported living services. To claim that involving self-advocates will exclude nonspeaking Autistics or Autistics with few adaptive functioning skills is untrue.

Secondly, as alluded above, including highly verbal people with relatively high levels of adaptive functioning skills also does not exclude all other Autistic people from either eligibility or funding for services. What it does is expand the eligibility criteria so that all Autistic people, whether verbal or not, are able to successfully petition to receive appropriate and necessary services in their individual cases. This is actually broader and more inclusive than were self-advocates excluded from the process or its results.

Thirdly, "people on the internet" comprises a huge swath of people with varying opinions and beliefs. There are some true extremists out there who promote ideas like "autistic supremacy," akin to the idea of "white supremacy" in that, according to this ideology, Autistic people are inherently superior to non-Autistic people by evolutionary design and innate ability. But the vast majority of Autistic self-advocates do not espouse theories like autistic supremacy. We simply believe that autism is both a disability and a difference, and that the disability should be mitigated and accommodated wherever possible while encouraging and recognizing the validity and value of the difference. For some Autistic people, there is more disability, and for others, there is less disability, but in all cases there is positive difference that, in part, defines the Autistic person's identity, as opposed to being a negative and removable attribute.

Frankly, I'm not all that surprised that my brief comment of two words ("And self-advocacy") was met so quickly with such violent rebuttal. But my hope is that in coming months and years, people from across the autism community -- Autistic people, their parents and families, caregivers, professionals, and educators -- will come to accept that whether or not they might agree on issues like cures and neurodiversity, all of us have valuable and important voices that need to be heard and acknowledged in order for us to move forward.

5 comments:

I agree with you Lydia !.... Every Autistic person can attend The Sub Commitie ; Is it Verbal or NON verbal !!!! The NON verbal individuals may bring an Ipod to communicate and those who are AGRESSIVE could also take part by video call or Skype ( If permissable ) :| !!!! .... DUSYA LYUBOVSKAYA....

Lydia, excellent essay, and a stellar example of being able to separate personal feelings (I have to imagine you were quite insulted and upset at the personal attack) from the underlying logic (or illogic) of the discussion.

I'm also glad that you used "non-speaking" in response to the comment about "nonverbal" -- I think the latter is way overused and is probably, in most cases, inaccurate. I don't know if statistics have ever been compiled, except that I have heard that "half" of all people diagnosed with autism are non-speaking (when they are diagnosed!). It's not clear to me how many of these people are non-verbal, and also how much things will change for these people throughout their lifetimes.

The recent movie "Wretches and Jabberers" http://www.wretchesandjabberers.org/ is a story about two non-speaking men who learned fairly late in life to communicate via technology. They had clearly been verbal most of their lives, but had not found a way to express themselves.

I also think that sometimes people, such as the mother you describe, try to pin all of their woes on autism, and conflate autism with other disabilities that may be present, too. In her son's case, I have no doubt he is autistic, though it sounds like he may have one or more other conditions that lead to violent behavior. I'm not aware of any aspect of autism that leads to violent behavior, though it is certainly true that many autistics get so frustrated with a world they can't understand that they flail out in rage against that world.

This behavior may be perceived as violent to others, but may not be intended by the offender to be harmful. In such cases, is this a mental health issue, or is it autism? Or a mental health issue brought about by autism? We have an awful lot yet to learn about these complexities.

This is a wonderful entry. While the mother you referenced above obviously was very outspoken regarding advocacy in regards to non-verbal autistics [like her son] she displayed some anti-logical arguments which you pointed out.

It is possible to not want a cure but to also need supportive services, accommodations, etc. It is also true that those of us who are verbal are often denied/overlooked/etc. for supportive services, accommodations, or even just simple understanding.

Even if we still have deficits in verbal communication, the fact that we CAN speak often creates the misconception that we do not need any support services, accommodations, etc. Some of us have the ability to verbally speak but not effectively communicate verbally [which is a big difference] but also are perceived as without deficit and then our needs are ignored [even though we speak up] because, obviously, we are faking it.

The squeaky wheel does not always get the grease, sometimes it just gets set aside.

I'm on the autistic spectrum and "high functioning" (though it doesn't always feel like I am). Access to the services would help me achieve my career goals and I'd be in a better position to provide assistance to other spectrumites, which is what I really want to do. I think auties/aspies should help each other because I believe we can empathize with each other in a way that NTs can't empathise with us. Sorry for being anonymous, I'm not ready to come out publicly (yet).

Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.

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